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Heidi Johansen-Berg is Professor of Cognitive Neuroscience and Director of The Wellcome Centre for Integrative Neuroimaging at the University of Oxford. There, she leads the Centre for Functional MRI of the Brain. Her research focuses on how the brain changes with learning, experience, and damage. 

As well as shedding light on how the healthy brain responds to change, her team’s work also has implications for understanding and treating disease. For example, they are testing new methods for rehabilitation after stroke and assessing whether taking up exercise could slow the effects of age on the brain.

DO YOU HAVE DIFFICULTY USING YOUR HAND/ARM AFTER STROKE?

If so, Professor Johnsen Berg-has asked us to disseminate a study in which you may be interested in participating – or you may know someone who is.

stroke arni upper limb oxford study 300x225 - Difficulty moving arm/hand after stroke? Neurofeedback - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceThe aim for this study is to research a treatment method to see if can improve upper limb function.

Many stroke survivors experience weakness to one side of the body, leaving them with difficulties in daily activities. Current physical therapies are limited in their success and are very time demanding. Therefore, treatments to use alongside rehabilitation are sought.

Learning is an important part of rehabilitation after stroke. When learning a new movement or skill it is important to get feedback so that you can repeat movements that were successful or try to adapt ones that did not work as well. What if there was a way to also get feedback of your brain activity when trying different movements?

Researchers at the University of Oxford are currently testing a new type of treatment for stroke survivors using MRI Neurofeedback. Neurofeedback involves participants being shown a live visual display of their brain activity whilst in an MRI scanner so that they can see which kinds of movements are best to increase the activity in the brain hemisphere where the stroke occurred.

Participants are asked to lie in the scanner and try to move their affected hand in different ways. The activity of their brain is recorded while they perform these movements and then shown to them as a ‘thermometer type’ bar that gets bigger with more activity.

Previous neurofeedback studies by Dr Heather Neyedli of the University of Oxford (Neyedli et al., Neuroscience, 2017) tried showing real or placebo feedback while volunteers who had not had a stroke moved their hands. They found that people could use this technique to change their brain activity while moving their hand.

There has been limited work with stroke survivors using this technique and researchers at Oxford are currently looking for people who have difficulty using their hand/arm after a stroke to take part in some MRI neurofeedback sessions to see if this treatment can improve motor function.

If you would like to join this study/find out more, please feel free to contact the researchers:

Mr Tom Smejka: thomas.smejka@ndcn.ox.ac.uk

Dr Melanie Fleming: melanie.fleming@ndcn.ox.ac.uk

Professor Heidi Johansen-Berg: heidi.johansen-berg@ndcn.ox.ac.uk

 

CALL 01865 611461

 

Example of visual display showing increasing brain activity

MOVE LEFT 300x71 - Difficulty moving arm/hand after stroke? Neurofeedback - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to Face

 

 

 

 

Below is a talk given by Professor Johansen-Berg – click and play!

 

Many years of research suggests that the mobility and functional dependence of stroke survivors worsen over time and that accessing later rehabilitation becomes increasingly difficult for stroke survivors. This raises the big question: when should your ‘supported care pathway’ end? The ideal answer is ‘when I am better’.

The problem is that stroke survivors rarely simply ‘get better’ or ‘get back to normal’. Clinical rehabilitation therefore always has to be a compromise, due to time and resources allocated to professionals and patients. Just ask any hard-working physio or OT! And there are also some specific factors (Approach-specific factors, for example) involved in this compromise which will probably never be fully explained to your satisfaction, even if you were to ask.

51es4IOg20L. SX389 BO1204203200  235x300 - Does your therapy end too quickly? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceStroke survivors simply tend to know when therapy seems to have ended too soon. They can feel very neglected. Let’s quickly examine Professor Glen Gillen’s handbook ‘Stroke Rehabilitation: A Function-Based Approach’ (a must-get’ read).

In it is an inspirational account from his colleague, the late Professor Barbara Neuhaus (Director of Columbia University’s Programs in Occupational Therapy) who had a stroke in later life and wrote an inspirational description of her resilience and fighting back against her new limitations.

When she got back home from the hospital, different therapists came to her house and assessed her. All three independently signed off that she was too advanced to receive home therapy and so she lost eligibility for further therapy because she was too ‘well’.

Yet instead of feeling elated that these three professionals had all independently agreed she was well, she just felt abandoned and let-down and certainly felt that her rehab was very far indeed from complete.

I’m not sure this squares with US clinical practice guidelines concerning management of adult stroke rehabilitation care:

‘Patients who have sustained an acute stroke should receive rehabilitation services if their post-stroke functional status is below their pre-stroke status, and if there is a potential for improvement. If pre-and post-stroke functional status is equivalent, or if the prognosis is judged to be poor, rehabilitation services may not be appropriate for the patient at the present time’.

Is it that this community therapy failed to recognise the requirement for further rehabilitation, was there no money or time to help her further or was what they felt they could do for her in itself limited at the time? I don’t know. Interesting to speculate though.

Back here in the the UK, we know that many people, after discharge from community physio are clearly not ‘well-enough’ not to need further assistance. They may still be stuck in wheelchairs and/or using sticks and orthotics without much of an idea of how to proceed (ie, self-manage, self-rehab, diminish the use of functional aids over time etc) when the care pathway (from the hospital and community teams) has finished.

But really, it has to be said that the NHS has 99 times out of 100 (or so!) done their very best for them, with usually outstanding pathway – from critical life-saving care all the way to other leading-edge follow-up services such as Prof Nick Ward’s Upper Limb Clinic, which I hope will be used as a blueprint for similar services in hospitals around the UK.

ARNI Wales Stroke Exercise Rehabilitation 300x168 - Does your therapy end too quickly? - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to Face

But here’s the thing. Community therapy obviously should phase into a much, much longer, joined-up and structured period of support. And I think all involved in stroke care would agree with me. But it can’t. The questions to be asked are then: who can help, and who will pay for it. Big questions.

A partial answer to the first may possibly be to activate a rung of professional therapists and exercise trainers to support the hospitals in the way that ARNI has done for years. The answer to the second is unclear and outside the remit of this blog!

Back to ‘what happens after therapy’. There is an interesting review of a workshop carried out by the Care Quality Commission (CQC) that I accessed way back in in 2009 that examines services for people who have had a stroke and their carers. The conclusions from the workshop echo the same stories we are told at ARNI every day. Some of the people involved were even our past patients and carers.

The report includes the comment which I get nearly every day on the phone from stroke survivors and carers as a way to precede asking for help. Quoting from the CQC document: “…often people have been given very negative prognoses. They write you off totally, giving you no hope.” It’s important to acknowledge that once YOU BELIEVE that someone who you view as representing the medical profession has told you this, there’s not much you can do to undo having been told it! It’s the way you respond to it that counts.

My view about this for many years is that often people won’t actually have been told ‘you’ll never move this limb again’, or similar, but it’s what they’ve come to understand as the sum result of the ‘it’s not ethical not give my patient false hope’ thing.

It’s actually the only way possible to proceed clinically, but the net result is people either simply giving up before they start, or go the opposite direction and going at their rehab with renewed vigour ‘to spite’ the consultant/physio or whoever they have labelled as the naysayer! I can’t tell you how many times I’ve heard this with stroke survivors who train with me. Personally, I’m not sure it’s helpful to give little hope to people – I hear this less and less now, thank goodness.

Back to a few more of the issues raised in this 2009 workshop. The people involved discussed how the physiotherapy they had received had been very good and said the physiotherapists had really cared for them. One participant mentioned how the physiotherapists had helped him get out of the house which was really important to his recovery (turning point) and commented that he still keeps in touch with them. The group discussed, however, that therapists are under a lot of pressure and some commented that their physiotherapy service had been cut-off after a certain period of time.

One stroke survivor felt that whilst in his experience the physiotherapy was very good in hospital, the physiotherapists never explained the purpose of the exercises they were given and how they would help. Another participant highlighted the importance of physiotherapists explaining the reason and importance of carrying out exercises. Some people talked about finding further help merely ‘by chance’, and said that they needed help navigating ‘the system’.

Another stroke survivor described how when he had a stroke he was declared medically unfit for work, ‘thrown out’; and had nowhere to turn. He went to the Citizens Advice Bureau but they did not have the expertise. On the medical side, he was simply sent home with no support or back up. He was told he would make a full recovery and had his benefits taken away. He said it was not until two years after his stroke that he was referred to the Stroke Association for informational help. Another stated that independent services are bewildering and it is very difficult to see what you might be able to get to fulfil your needs and help you live. He expressed the view that the voluntary sector is often better than state care services in this regard.

A carer said that the intensive physiotherapy received in hospital was not followed up after discharge, and that they had to wait several weeks after going home for home-based physiotherapy to start. She added that physio (once a week for 6 weeks) was not adequate and that, although instruction sheets were given for practising between sessions, there was no ongoing support after that time. As a result she paid for private therapy. 

But then maybe services in general have improved across the board in the 10 years since this CQC Report.

So, what do you think? Does community therapy end too quickly? And what can community services do better to support physical rehab? Also, what does usual clinical care tend not to concentrate on enough for individuals before discharge?

Upper limb impairment affects most patients at the time of the stroke, with persisting problems for between a half and three quarters of survivors. This can be partly explained by where the injury is in the cortex. But because regaining lost function in the upper extremities has been found to be more difficult to achieve than return of normal function in the lower extremities, only 14% of these will regain any useful function. Between 55% and 75% continue to experience upper extremity functional limitations.

Professor Nick Ward (who has kindly taught my ARNI instructor groups at UCL for around 10 years now) runs the UK’s first and to date only dedicated (and outstanding) Upper Limb Service at Queen Square. He states that upper limb recovery after stroke is unacceptably poor – and gives some stats:

  • 60% of patients with non-functional arms 1 week post-stroke didn’t recover

(Wade et al, 1983) 

  • 18 months post-stroke 55% of patients had limited or no dextrous function

(Welmer et al, 2008)

  • 4 years post-stroke only 50% had fair to good function 

(Broeks et al, 1999)

If you’re a stroke survivor, you know already that regaining upper body function is a very different task to rehabilitating the lower body. Nevertheless, the two ‘halves’ of the body are not so different after stroke. New evidence says that both the upper and lower limb are as weak as each other after-stroke, which suggests that the poorer recovery of the arm, so frequently seen in stroke patients, may not be an inevitable consequence of the stroke.

An excellent research paper by Professor Sarah Tyson and colleagues in 2006 called ‘Distribution of weakness in the upper and lower limbs post-stroke’ advises that the effectiveness and intensity of rehabilitation interventions should be considered. This may well be so: the majority of stroke survivors whom I’ve met, when describing their prior physiotherapy and any other rehabilitative efforts, will report that the focus of consistent therapy was usually on the lower limb and walking practice. A minority remembered consistently focusing on practising upper limb exercises.

This happens for a number of reasons, but primarily because it is critical to get stroke survivors walking, and also essential to keep spirits up with the recognition of progress, which probably is facilitated better by the thought of being able to walk again. So hospitals often do not have time to devote to extensive hand-function efforts, and by the time further treatment is sought, the task is all the more harder.

The evidence states clearly that initial degree of motor impairment is the best predictor of motor recovery following a stroke. So, functional recovery goals are appropriate for those patients who are expected to achieve a greater amount of motor recovery in the arm and hand. But the evidence also shows that compensatory treatment goals should be pursued if there is an expected outcome of poor motor recovery. We are even uncertain whether task-specific repetitive training improves upper extremity motor function.

It is vital that stroke survivors are shown, in clinic, ways to either train for progressive functionality or physical self-management techniques or/and both. Rather than leaving people to try and work it out for themselves once they reach the community.

Those with more potential can be shown how to radically ramp up the dose of repetitions performed with upper limb during the day, perhaps incorporating modified constraint induced movement therapy (a beneficial treatment approach which can be done at home, for those stroke patients with some active wrist and hand movement). Professor Nick Ward told me that Professor Gert Kwakkel and colleagues noted way back in 2003 that those showing some synergistic movement in the upper limb within 4 weeks after stroke have 90% chance of improving. 

We interviewed Professor Nick Ward to find out more about his views about what both therapists and stroke survivors can potentially do to improve upper limb outcomes after stroke:

 

You may well be interested in reading just some of the questions asked of me by stroke survivors. You may be asking yourself some of these same questions right now. Or may have conquered many of these issues already. These are a sample of meaningful issues drawn from just two places. First, from the sum of a trawl though hundreds of emails to ARNI from stroke survivors from 2007 to 2011. Second, from the sum of a trawl though notes taken next to baseline assessments (Stroke Impact Scale) face to face with stroke survivors. For more information, see the Successful Stroke Survivor manual, published in 2011.

  • Will I be able to walk properly again?
  • Will I be able to coordinate my body movement better?
  • Will I be able to converse properly again?
  • Will I be able to understand people?
  • Will I have to compensate or will I recover actual movement?
  • How weak will I be (muscle loss etc) after discharge?
  • How much rehabilitation will I need?
  • Does my type and severity and site of my stroke impact on my recovery potential?
  • Will my visual problems recede?
  • Will I be able to write properly again?
  • Will I stop feeling overwhelmed and fatigued?
  • Will I be able to drive? Catch a train? Go on holiday?
  • Will I be able to dress myself properly?
  • Will my spasticity (in upper limb/lower limb) recede?
  • Will it be hard to get back to running/being aerobically fit again?
  • Will I get back my full movement?
  • What is the timing, intensity, or duration of such activities I need to do?
  • Will my confidence return?
  • Will I enjoy life as much again with the things that stroke has left me with?
  • Will this affect how long I have to live?
  • How much do I need to rely on being motivated?
  • Will I have to drive this recovery myself?
  • At what point will my movement start to come back in my hand/foot?
  • Will I be able to wear high heels again?
  • Will I be able to do everyday manual tasks (using a knife and fork, opening jars)?
  • Will I be able to regain my strength, flexibility, balance & endurance?
  • Will depression due to loss of ability and abrupt change in life be a factor?
  • Is it true that there is a cut off point for functional recovery?
  • Will my sex life be affected?
  • How long will I need to rehabilitate for?
  • Will I be able to get back to my job/studying?
  • Will I be able to regain a high degree of independence?
  • Will I be able to become progressively more self-sufficient?
  • What current technology for stroke rehab is worth investing in?
  • Might I suffer a further stroke?                                                                            

20140303 145458 300x169 - 35 questions stroke survivors ask - Stroke Rehabilitation and Exercise Training for Survivors & Specialist Stroke Courses for Therapists and Trainers, Online and Face to FaceNo consultant, therapist or expert in stroke research would attempt to answer the majority of these without preceding and qualifying the answer with an ‘if’. You are different from anyone else; from injury to the brain and plastic potential to occupational difficulties, demographic details to rate of recovery and lifestyles, making your presentation unique.

So although there are general principles of stroke recovery, and there are some common problems suffered by a majority of stroke survivors, no two stroke survivors ever shares exactly the same experience.

I will tackle all these issues in future posts – sign up now to receive the posts straight after posting.



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